In general, how has technology helped you live with ALS?
The short answer is totally.
Frankly, with out all this technology to control a computer, and the access it gives me to internet communication, I would have allowed myself, to simply succumb myself to ALS years ago.
With the technology available now, I am able to keep myself occupied both professionally, albeit volunteer, as well as socially.
I am able to be of service to others and to the cause of finding an effective treatment for my own disease.
This keeps my perceived quality of life quite high.
I can talk with visitors but I can also schedule their visits.
I can manage my own finances and health care.
Outside of the physical paralysis that I am still nearly as independent and potent as before diagnosis.
What are three of your biggest challenges right now.
Like turning off light, controlling temperature, and how do you currently manage those challenges?
I have an infrared transceiver which coupled with software on my computer I can control my television and stereo.
I use various network tools to control other computers around my house and to help other patients around the country with their own computers.
I have attendants who help with lights, temperature, windows, etc.
And what was your experience wearing the Emotive Insight Brainware?
It is very lightweight and comfortable in its current, second incarnation.
The training of the device requires a little patience but it's surprisingly natural in feel.
We use our interface devised the Philips POC product is a work of art.
I am very impressed with the work done to ensure flow and feedback.
If it were to hit the market, how do you see it improving your life?
There are critical limitations if one wants to use eyes.
Also eyes can fail.
Medication interferes with pupils.
In ALS, the eyes are relatively spared, but I've lost two friends whose eyes succumbed to the disease, and they could no longer communicate.
With this product they could have continued living, that alone demands a market for this.
How do you hope technology can improve to help other ALS patients?
We have amazing technology and commodity consumer goods.
That power must be delivered to the average person in a way they can use and at a price they can afford.
This product can achieve both, while also being the most noble form of technology, restoring lost ability and personal independence.
We, as people, are the expression of our minds.
Our physical bodies are just a vessel for a manifestation of the mind.
Therefore, loss of physical ability does not diminish our persons.
All it does is limit the ability to manipulate the physical world.
I am somewhat of a transhumanist and believe that technology can not only enhance abilities but also restore lost abilities due to trauma or disease.
So until medical science catches up technology is the cure for [INAUDIBLE]
